Living with CHD - Teens
It is hard to be a teenager. It can be even harder to be a teenager with CHD. Even if you feel great, CHD never really goes away. It is important to continue to go to your doctor, even if you don't feel like you need to. It is better to stay on top of your health than have something creep up on you and cause big problems. These resources can help you make that big leap from your parents being in charge to you taking control of your well being.
This interactive checklist guides patients gradually through the process of transition from pediatric to the appropriate adult care and helps them take ownership of that care. This resources is set up in phases, rather than by age, making it useful to patients across the lifespan.
From quizzes to fact sheets, this site helps teenagers understand the importance of taking control of their health. While this site is not specific to congenital heart disease there are many great resources that can be helpful.
ACC Transition Tools for CHD
These tools are geared a bit more toward the doctors and the healthcare team, but they can be very useful for families as teens learn to manage their own care.
I Heart Change – A Canadian project
This website is designed mainly for young people with congenital heart disease (CHD). You need to register to view the resources available. There are several resources specific to CHD. Parents, caregivers, and health care professionals can register, too.
Managing Your Care
Top 10 Things to Remember
This can be an especially trying time in the life of an adolescent with congenital heart disease, especially as they are undergoing the major transition of leaving the nest and going off to college, joining the workforce, or just moving far from home. This resource can serve as a guide to the key points to remember about taking care of their health, wherever they roam!
Guided Questions Tool - ACHD Edition
A list of questions for ACHD patients and families to ask their care team.
Guide to Your ACHD Care
This resource offers tips for maintaining care through adulthood and includes a summary chart of the ACC Guidelines to ACHD Care.
Parent Guide to Your Child's Future ACHD Care
This resource offers tips for helping your child maintain care into adulthood and includes a summary chart of the ACC Guidelines to ACHD Care.
Understanding Health Insurance for College Students & New Grads
The current health insurance system in the U.S. can be a complicated system to navigate, so this guide is designed to help students understand staying on their parents plan, the Affordable Care Act, how to choose the right plan, and common insurance terms that every patient should understand.
School & Work
20 Scholarships for Students with Health Conditions
This guide provides a look at some scholarships available for students with medical conditions, as well as advice on how to win them. While several cover other conditions some do pertain to those with CHD. *Please note, this resource is not maintained by PCHA, scholarship info is updated by a third party.
Family and Medical Leave Act (FMLA) Fact Sheet
As adults, we can't have our parents call us in sick to school when we have extended medical needs or family to take care of, but we may not be eligible for extended disability leave from work. The Family Medical Leave Act (FMLA) could be a good option for you, if you or your loved one need more than a couple days off of work to manage a medical issue. Below find details on what and who FMLA covers.
Family & Lifestyle
Toolkit: Managing Anxiety
This resource, developed by NHS University Hospitals Bristol, offers tips to manage the anxiety that can accompany chronic illness. With consent, the format has been modified.
Toolkit: Managing Depression
This resource, developed by NHS University Hospitals Bristol, offers tips to manage the depression that can accompany chronic illness. With consent, the format has been modified.
Toolkit: Managing Stress
This resource, developed by NHS University Hospitals Bristol, offers tips to manage the stress that can accompany chronic illness. With consent, the format has been modified.
Grace was born on March 7, 2017. At birth, to her parents heartbreak, she was diagnosed with complete atrioventricular canal defect (AVSD), as well as trisomy 21. She had open heart surgery on August 7, 2017 at just 5 months old. The first year of her life was hard on her family, especially the first...Full Story>